Angelic: Update on Mom - Lupus Message Board

PINKYPRISCILLA · 03-11-2004, 08:22 AM

Hi there,

Its been a while Just wanted to fill you in and get your opinion on this:

If you recall we stopped going to her old rheumy because she was getting
these wierd pains in her forearms and red hands. So we went to the new
rheumy around the holidays and he took :"a lot " of blood work and he is
also known for his expertise in immune system problems. So we went to him
and he says that she did NOT have RA (nor Lupus at this time)when we were thinking that she had it
all along and she was getting the Gold shot for no reason. He told her that
her blood doesn't show RA (no inflammation) so the diagnosis so far is :
Sjrogen's syndrome, Fibro, osteoarthritis, and osteoporosis.
He initially said Mixed connective tissue disease. ?????
Can lupus change into these other diseases? It can come and go ?
He also says that right now her blood shows Sjogrens.
THis is so wierd and we are confused? Any ideas?

Pinky

AngelicBrat · 03-12-2004, 11:12 PM

Hey you!!!

Its so nice to hear from you

I don't agree with that Rheumatologist.. but the diagnosis of Mixed Connective Tissue Disease makes more sense than any! Remember that MCTD basically means "I have no idea what is wrong.. so I am giving you an umbrella of diagnosis". How is your mom doing without the gold shots? Is she feeling any better? I don't know what to think about the Lupus being ignored and your mom being told that she doesn't have it anymore. The important thing is that her Lupus symptoms are being treated with Plaquenil, or another drug to help. Has that Rheumy re-tested your mom for everything since she has been off of the Gold shots? AND I really hope that she can be retested for Scleroderma. Those tests should not be ignored.. they were positive! Please take care and send your mom a HUGE hug from me

Sure did miss you!!!

~Luv, Dana

AngelicBrat · 03-12-2004, 11:14 PM

P.S. The blood test for Sjogren's is the Anti-RO. If she is positive for it, she has it active. Sjogren's is a dry eye, dry nose, dry EVERYTHING disorder. I find that with my Sjogrens the worst things affected are my eyes, mouth and butt. OH and my stomach! It can affect the joints, organs and tissues too. Its a real pain in the butt! (No pun intended)

Talk to you soon!

~Luv, Dana

PINKYPRISCILLA · 03-15-2004, 07:21 AM

Quote:

Originally Posted by AngelicBrat

P.S. The blood test for Sjogren's is the Anti-RO. If she is positive for it, she has it active. Sjogren's is a dry eye, dry nose, dry EVERYTHING disorder. I find that with my Sjogrens the worst things affected are my eyes, mouth and butt. OH and my stomach! It can affect the joints, organs and tissues too. Its a real pain in the butt! (No pun intended)

Talk to you soon!

~Luv, Dana

Hey Dana

Thanks for the reply, ....Missed you too!!!
Ive been dealing with other issues lately so. My husband had a blood clot
on his lung and was hospitalized in February, so there were other distractions.
Now he is on blood thinners and bumped his upper thigh on glass coffee table!!!
Anyway, this rheumy is very thorough, he now says all of her blood work
says "sjgogren's" so that's the diagnosis for now. She gets wierd burning
hands and elbows which is strange?!
We go for an appt next week so what questions do you think should I ask?

I think she was diagnosed with lupus back in "90 but he says that the blood
can change into other disorders related to lupus? I do believe she has lupus
but that it has manifested into another disorder.....primary and secondary
Lupus being primary, sjgogen(sorry spelling) secondary.????
Oh and the burning hands? I wonder what that can be?

Luv
Pinky